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by Rachel Miller and Susan Elizabeth Mason (Editors)
Columbia University Press, 2002
Review by Roy Sugarman, Ph.D. on Sep 25th 2003

Diagnosis: Schizophrenia

From the start the authors acknowledge that this is really a book they have compiled, or rather edited, mostly from the writings of their patients at the Hillside facility in the USA.

For most of us who work in such surrounds, the stories are either comfortingly or tragically familiar.  As they write of their first experiences or hospitalisations with this condition, those with psychosis present and past document the sudden realisation that their lives have changed for ever.  Although some write with clarity, and the compilers appear to largely have left their syntax alone, most have the dullness and sad weight-bearing properties of the mentally challenged.

The challenge of the condition plays itself out in the usual ways: the initial strain of their lives, then the symptoms and strangeness, at first tolerated, then denied, then capitulated to, then the trap of hospital, the medication and the side effects, the interaction with society taking hold of their freedom, and the overall burden of psychosocial loss.

With most, it seems the losses drag them down for periods of up to five years, until they come to some stability.  They get fat on olanzepine, drool on clozapine, tremble on risperidone, get stiff and impotent on typicals, and can't make up their minds on quetiapine.  They get depressed, they deny, they resist, they capitulate.

They struggle in most human ways with telling or not telling partners in sex and society, business and family.  They feel the guilt of any action that may have led to their being one of the chosen, and struggle with the fact they were.  One writes "why me" and then "why not me" when told she has been touched forever by this condition.

For anyone far down the line as a treater, or carer, or patient, this is a nothing-new book.  For those family or patients who are only just coming to realise that something is wrong and will be forever, this book is full of the new and the sad, bad and mad side to schizophrenia.

Some of it is only vaguely contentious, such as the mooted fact that schizophrenia is a "chemical imbalance" or that the drugs "regulate neurotransmitters" or other platitudes that violate the idea of brain systems in interaction, or the unidirectional antagonists, or of the Goldilocks drugs, or of the rich interactions between genotype and phenotype. The experts lurk in the background, but don't really put themselves on the line: this is a book by the people and for the people.  It treads softly politically.

It still follows the party line, you have an illness, we have pills, we cannot cure it, you go to hospital, you will be sick forever: all true enough.  But some stories, such as Zelda's, are told in more detail, and plague the mind.  Some of these stories are made more effective by the banality of tone:

Eating and drinking caused ... trips to the public, dormlike bathroom ... torturous for me.  The first time I went into one, a lady, maybe in her mid-thirties, looked at me and let out a low-volume Hi ... Her hair was up in a sloppy, curly ponytail; her face was lacking in makeup and happiness.  I vocalised nothing in return, but my face said to her, "Please just ignore me.  I'm only here because I couldn't hold it in anymore.  My first choice would be to pee all over the floor in my room, but then I would have to associate with that man with the mop." Maybe she didn't hear all that with my expression.  Probably she just quickly go the notion that I was as hopeless as she looked.

As a book, it avoids, like the plague, the news of the fomenting militancy surfacing amongst patients, some of whom turn on their medical carers with violence: patients who default on medication are understood, but misguided.  DSM-IV is deity, and its subdivisions are fact: everyone goes to Level III in hospital.    Rehab and recovery models are not offered up as viable alternatives to hospital, and stigma is accepted, not challenged, one merely has to lie and deny.  This book is after all a breathy attempt to present this damning illness from the damaged goods consumers themselves in an attempt to humanise the patients and mitigate the stigma; the Who am I now? Chapter is uninspiring.

The concern is that this book will only be read by the converted, or the families who are informed a little now, but not yet there.  The vast Joe Q Public average person in the bookstore will simply not buy it at all.  Schizophrenia happens to someone else, means split personality, is not our problem.  Overall the book is depressing.  The drab, passive ordinariness of the patients themselves would scare the hell out of the lay reader, who would perhaps not discriminate so much, but certainly would be terrified.  There is here only the offer of hospital care: there is no reflection from the patients that assertive community care is being applied to their cases as they leave acute services.  Rehab appears to be hospital based, expensive, the stories collated by professionals.

Recently, a colleague of mine became psychotic and very disorderly in a large city.  He was taken by his mother by the GP, who sent him immediately to the psychiatrist.  He spent an hour with him, sending him home with 400mg of quetiapine on board, increasing every day. Two hours after they got home, a community team consisting of a nurse, medical student and social worker arrived.  They came once a day for a week, helping him and the family sort out the medication.  After two weeks he felt better, and was less sedated.  The family began to attend evening sessions at a local information group to find out about this illness.  He is well, and despite some minor relapses in the year that followed, has yet to set foot in a hospital.  Or write about seclusion, hierarchical wards and rule-driven systems.  Not confined to a hospital despite being at risk, he never lost who he was, never used the dormlike bathroom, he went home to bid, like most sick people.

In most other cities, including my own, he would be writing his story from a hospital ward, spending months there, with people being rude to him, learning to adapt to the society of the damned.

His story is different.

So the book sets out to tell the story from the horse's mouth in a traditional psychiatric setting, and does so, in comic book style and with comic book charm.  Charming line drawings of each writer head their paragraphs, and each character ekes through, rather like a caricature of someone we have known or locked up in our time, or jumped on five at a time, or stuck with needles loaded with oily parkinsonian agents.

Its hard to imagine the market for this book.  Perhaps each new patient entering a ward with the threat of diagnosis, each family in tow, needs to be issued with such a book.  1% of the American market will need to see this, about 2 million people, a huge market, all needing to know what others like them have gone through.

Although subtitled a 'comprehensive resource' work, there is not much.  It is more like a survivors journal, allowing only a tiny bit of the phenomenology of being nuts to come through.  Many of my own patients have done a better job, are more colourful, and give their carers a much richer tableau of what the experience was like in retrospect.  It seems the patients of Hillside give a more sanitised, mellowed or toned-down view.  They have had to discard their rich experiences so they could leave the locked ward, seem tentative in trotting out their feelings and experiences when doom struck.  In this way, their stories are drearily tragic, and fail to inspire.  Contributions from the experts are given from the doorway, not upfront, sure done deliberately so as not to intrude, but lacking the richness of tapestry that Art Brut can provide, and denying the sick creativity produced by the illness.  Oliver Sacks of course has done this so well in behavioural neurology, so much so that it is a pity to see such a chance in psychiatry slip through the fingers of the authors/compilers of this minor paperback.

So for those hospital wards who need to give out a cheap and comprehensive brochure on schizophrenia, for those families and patients who are embarking on a journey they did not choose, and would love to abandon, this is the work, easily read and absorbed, of those who have drifted through, and are trying to find meaning, positively, negatively, and cognitively.  For this purpose, it is just fine, and takes a mild look at horror, decline, and despair, all with the spin of the patient advisor.

I don't think that students in the mental health professions would find this book that interesting, unless their training never fleshed out this arena at all, or they had no contact with such sufferers.  It does inform though, banal and trite.  The internet has become a powerful resource for most, but for those who do not have such luxuries, perhaps the drug companies could buy a few thousand of these and distribute them to the families who need to be comforted, but not aroused.  Helpful, in the end, it is, but only for those in the USA.

What is missing is the concept of recovery: not from the illness, but from the loss of social position, of social capital.  The book sets out to inform, and it does, but not in any revolutionary way.  The experiences of those in this diary are left spun and sanitised, but without champion.  Until affirmative action is used to address the seriously skewed playing ground, the stories of the damned are sad and tragic: those with serious mental disorders are facing society in an unequal relationships with their culture, and they are therein disadvantaged.

 

 

© 2003 Roy Sugarman

 

Roy Sugarman PhD, Clinical Lecturer in Psychiatry, Adelaide University, Senior Cinical Neuropsychologist, Royal Adelaide Hospital Glenside Campus Extended Care




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